- CASE FILE
7 years of undiagnosed chronic pain in hands that spread to arms and now legs, and is continuing to worsen.
ABOUT THIS CASE FILE
I'm seeking help from this amazing site and community because for the past 7 years I've been suffering from unknown, undiagnosed chronic pain that Stanford and my team of doctors cannot figure out and is continuing to worsen and showing no signs of slowing down. I don't believe that this is fatal in any way, its just hard to be 23 and look perfectly healthy but have to use a scooter around target or after 16 years of sports and being active to constantly being tired and barely being able to walk more than 30 min without horrible pain and needing to be pushed around. More than anything I don't care if I have this for the rest of my life, I just want some answers to what is wrong- is it genetic? Can I pass this onto children? Can I even have children? What happens once this medication stops working? I have been tested for basically every kind of disease my doctors could think of and were eventually told by the higher ups at Stanford to stop chasing zebras. It was rapid onset, both hands during school one day and I started on gabapentin but eventually maxed out on the dosage. My body becomes tolerant to medication quickly, so now I am on Naltrexone at 12.5 MG even though it has only been tested for pain use at 4MG. The pain continued to get worse and has spread to my legs in the last 2 years, first my knees and now the entire leg. My daily pain is around a 6 and can fluctuate depending on temperature, weather, and just general life. I am ALWAYS tired and basically just have a living head ache. I have done countless MRIs, brain scans, EMG, biopsys, Blood draws, even a genetics test to attempt to get into the UDN (which did not accept me due to the genetics test coming back negative.) I've tested negative for peripheral neuropathy, lupus, Lyme, Arthritis, Fibro, etc. My pain is heat triggered not cold triggered like most nerve related issues so my neurologists think that its not nerve related but Stanford has given up on me but also basically refuses to write me a recombination to another hospital. I'm really excited for this project and to have a community who understands.